Cystic Fibrosis Message Board
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| I'd be concerned as well based on symptoms. If not CF, then there's obviously something else going on here. Has your child ever had a respiratory (throat or sputum) to test for common CF bugs. Sometimes if they culture things like pseudomonas or steno. Maltophilia, that can be a sign for further testing.
IMO, keep pushing for answers, if anything to rule out cf I would try to find a doctor who will treat the symptoms -- treat as if he does have CF. Ask that they do a respiratory culture to see if any common CF bugs are growing. With DS, he has one done every 3-6 months and they determine what antibiotic the "bug" he's growing is sensitive to. Pseudomonas -- tobramycin and/or cipro. Steno. Maltophilia -- septra...
And with the borderline result, it wouldn't hurt to retake it. As for a geneticist --- ANYONE can collect blood and submit the test to the proper lab. In the states they have Ambry, Quest, Mayo to name a few that test for over 1500 mutations.
Just keep pushing for answers. I realize healthcare is different where you're located, but I have to remind myself from time to time that we're actually the customers, that we're paying for these tests and appointments. |
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